Years ago I worked in a thriving newsroom (obviously it was years ago – are there any thriving newsrooms anymore? But I digress). Around me, people would be slamming down phones, yelling across rooms, running loud typesetting machines, laughing at jokes, swearing at unreliable sources, toasting marshmallows, and building rocket ships at their desks. Well, I’m not sure about the last two things but my point is this: that sound — crazy-loud to anyone new to the environment — became background noise to me. Heck, in time, I didn’t even realize it was there.
Here’s my D-worry: How do I not make my seemingly endless chatter, writing, talks, requests, and fears about diabetes and my daughter become that same unnoticed background noise to my friends and family?
Because, really: I’ve been at this a long, long time. It struck me last week when I was lucky enough to be at the JDRF Fall Leadership Conference. It was a mix of staff and volunteers there, and after honoring staff for years of service, they asked every volunteer in the room to stand. Then they’d say “if you’ve volunteered more than three years, stay standing,” “more than five years, stay standing,” and so on. As the years crept up and up, I became one of the few still standing (Important note here: that’s not because volunteers disappear; it’s because for the most part, FLC is about training and inspiring newer volunteers). Nevertheless, when I ended up one of the last three standing, it got me thinking: have I burned out my audience? And if yes, how can I win them back again?
It’s easy when your child is newly diagnosed. There’s the drama of the hospitalization (in most cases). Flowers and gifts and calls and thoughts come pouring into your life like you’ve never seen. And you are so thankful for it. When it comes time that you are family ready to take action (in my experience, usually a year or so into the diagnosis), everyone is hot to jump up and help. Our walk team in the early years numbered in the hundreds; we raised hundreds of thousands of dollars over just a few years of walking. But then, something starts to shift.
While you are still absolutely in the same state of constant worry, oversight and fear, and even more important to note: while nothing, not one blasted thing about your loved ones diabetes has improved, the rest of the world begins to hear you as white noise. Sometimes I wonder if they are thinking “Aren’t they over that yet?”
Some people are bold enough to say it to your face. “Isn’t she regulated?” Or, “She’s had it forever. Surely it must be second nature by now?” Or, “Didn’t that pump thing make it all better?” Others just try to avoid you. Other things pop up around walk day. They politely ignore your request for a donation. And you, the one so desperate to keep it going, kind of don’t blame them. How can I ask my friends to keep helping when it’s been a decade and a half?
This is a volunteer issue that I have found different in the diabetes world than the cancer world. Let me explain. Before my daughter was a diagnosed; heck, before she was even an idea in my head, I decided to become a lifelong volunteer. My thought process was like this: I may never be rich enough to tithe in a meaningful way (I’m a writer, for gawd’s sake), I will always have my mind and my time. So why not tithe 10 percent of that? Looking for a place to begin all that, I turned to a natural decision: Cancer. In time, I was the President of the American Cancer Society in my area and we did some amazing, amazing things together. And I watched, in my years, what I will call the “cycle of volunteers.” Because the goods news here is in many, many, many cases, cancer can go into a nice, strong, long-term remission. When that happens, the family and friends of the person with cancer have a period of thankfulness when they volunteer even more and give even more. Then, for their own well being and for all the best reasons, they take the time to move on.
Move on. As in, make it all a semi-memory (and I have good friends and friends’ children who have fought cancer here. In no way to I mean they forget about it. They have check ups and worries and struggles and fears of long-term complications from their treatments. And to those who lose a loved one, I know that’s something that never dims. I give generously to ACS and hope for a true cure). Still, there comes a time for most of them when they feel well, are doing well and can move away from the immediacy of it all. I’m thankful for that.
We don’t have that in Type 1 diabetes. There is no remission. For now, until there is a breakthrough, there will never be a day, heck there will never be an hour, when diabetes does not place demands on my daughter’s life.
And therein lies the challenge: How, as an advocate and loved one, do you keep things relevant for the world around you? How do you not feel like a complete nudge asking and asking for support and help in the quest for a cure and better treatments?
I’ll be honest with you, I backed off on all my friends and supporters in the past two years. I felt (even if it was just me) like that one girl who took too many shrimp in the buffet line. I felt greedy.
But I think I’m ready to change that. I think I’ve found a place where I can try to work beyond my own white noise. This coming year will be Lauren’s 21st birthday and her 15th year of life with diabetes. We’re talking tens of thousands of fingerpricks and injections. We’re talking never, ever, having any kind of memory of what it’s like to just be well. We’re talking ups and downs the likes of which most parents cannot even imagine. I’ve worked hard at always telling Lauren that she’s the same as any other kid and can do anything, and really, she can do anything – just with a constant litany of medical interventions every single hour of every single day. And with a wildy expensive medical program. And with that thing that rests heavily on her shoulders: Fear. Ain’t no shruggin’ that one off when Type 1 is in town.
So be ready. Next spring I’m going to ask for support again, in honor of her and in acknowledgement of the fact that there is no remission here; no chance to take a break; no moment to say “Oh, yeah, we’re over that.”
And I’ve decided this: It’s not selfish. My friends’ kids and my kids’ friends have started having babies. Beautiful, round, delicious, delightful babies. Thanks to facebook, I can watch them grow and do amazing feats and become lovely little beings. But I’m a Mom with a secret. Deep in my heart, every time I look at one of their cute pics, I say to myself “Please. Not them. Don’t do this to them too.”
And I mean that. I’m prepared to keep fighting for my daughter, but I’m just as prepared to fight for a world where some day, our story is simply history.
No more Type 1. Please don’t let that ever be white noise.
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